The world doesn’t stop post autism diagnosis. Though you might think it will in the early days. For some parents, they already know long before the diagnosis that their child is autistic. You love your child exactly the same way of course, but may feel worried on the level of support needs they have. People can and do also feel differently about a diagnosis. And that may be influenced by so many different factors, including the care and support needs of the child. Developmental delays can lead to extra pressure to manage. Sleep issues can be hard to manage. Autism is absolutely not an illness, but it is regarded in the UK as a disability. The parenting role can be blended with the role of a carer. It is super hard to see your child struggling. Feeling worried about how your child will manage life with his/her additional challenges is quite normal. Regressions can be of varying levels, shocking and difficult for parents.
It’s not for me to tell anyone else how to feel. Feelings often change, and feelings are a journey. What I hear most is parents worry for their child. There is too much time lost on places like Instagram, with some parents who don’t feel a certain way, arguing with others who do. It is judgemental, in my opinion, and a waste of time answering to it. There is no one size fits all.
I felt quite delighted and relieved with LM’S final, official autism diagnosis in March 2023. We had known it for some time. I wanted to be able to say with assurance that yes he definitely is autistic, and widen the awareness and acceptance of that for him. I wanted to not be challenged anymore. Before and after it though, we’ve certainly felt worried for how much he may struggle. We like to focus on the positives and the good, but we’ve struggled as a family, reading reports about your child are of course worrying, and we’ve had some tearful moments. And support being varied when you weren’t expecting it. The differences in thinking and approach to life regarding autism are certainly beautiful. The struggles with developmental delays across many areas with a small child who may be more distressed and anxious because of it, can be really hard.
Emotional/mental well being:
- National Autistic charity offers parent to parent peer support: https://www.autism.org.uk/what-we-do/help-and-support/parent-to-parent-emotional-support-helpline
- Local inclusion hub offer parent support groups.Have a look at ours, which gives you an indication of what might hopefully be available to you too in your area: https://markfield.org.uk/children/parentscarers/
- Ambitious About Autism: online community for parents and carers https://www.ambitiousaboutautism.org.uk/
What happens after the diagnosis
There is a conception that an autism diagnosis means a lot more support. It doesn’t quite mean that unfortunately, or not in our experience. It does open avenues to more therapeutic intervention however, (OT, Speech and Language), though these NHS sessions may be limited.
Within the London Borough of Harringey, we were offered:
- Online classes, such as Sensory Awareness and Family Seminar. We found the former very helpful, and were referred to Paed Occupational Therapy following it. This is quite recent so we are still waiting. We are keen to discuss strategies to help LM’s attention and focus, and issues with touch sensitivity that influence personal care, toileting and eating. We also want to discuss strategies to help his attention and focus skills develop).
- Training for the nursery staff from LM’s allocated SENCO (Special Educational Needs Co-ordinator).
- Speech and Language began prior to diagnosis. LM had 4 sessions of 1:1 involvement and has been referred onto group Social Communication classes. These were great classes. LM was given some visuals such as “Core Board” and “Now and Next board” to help with his processing and anxiety.
- Referral to Specialist Health Visitor to discuss the sleep. Not particularly useful. She didn’t know much about autism. The referral to her coincided with the start of a change and beginning of exemplary sleep, just before LM turned 3. As issues with sleep with an autistic child, is much more than throwing your standard text book at the situation, I never find these chats especially useful anyway. However, we were desperate at the time of the referral and I said I would give it a go.
- We have a meeting with the SENCO and nursery to discuss what in the UK is called a EHCP or an “Educational Health Care Plan” for LM starting school next year. I feel particularly anxious about LM starting school, as we tend to use scripted phrases for speech, and can’t often explain what is wrong, so there may be more crying or outbursts, and he struggles to stay seated for most activities requiring concentration. We are really fortunate to have an amazing SENCO behind us to help with this process, of exploring local schools.
- Early Bird programmes https://www.autism.org.uk/what-we-do/support-in-the-community/family-support/earlybird-teams. I’ve asked about the next intake dates for this course in our local borough, as I have heard much good about it.
Other advice to help in the day-to-day
- Get a sunflower lanyard card https://hdsunflower.com/us/. This helps us personally at places where there may be queues, significant or small, as queuing can be too abstract a concept for many kids with an autism diagnosis.
- If you need big pieces of equipment and are struggling financially, consider applying for DLA, and checking out New Life charity, Family Fund, and Merlin Magical Days Out: https://newlifecharity.co.uk/ https://www.familyfund.org.uk/, https://www.merlinsmagicwand.org/
- Consider purchasing a “Radar” key. These can be bought cheaply from Amazon, and help those with any disability, open toilets on platforms such as train stations, where the toilet may not be open. This can be a huge help if you struggle with the noises from hand dryers, for example, in public toilets.
- 2 courses I completed that I would really recommend. 1) https://www.griffinot.com/sensory-processing-disorder-training/ and 2)https://theskillsnetwork.com/courses/level-2-understanding-autism-course. The second gives you a great, all round, general overview of autism and dispels myths and old fashioned stereotypes. I did this for free via the Skills Network after meeting some basic criteria: worth giving them a call. The first focuses on Sensory Processing Disorder. As it is thought that as many as 95% of children with ASC have Sensory Processing difficulties, this is a worthwhile course to do (£50 at time of writing).
- Find your local inclusion hub where they run meets with other parents, and play sessions with other families, as well as being able to offer specific guidance and assistance on things like EHCP (Educational Health Care Plans) as your child approaches school age.
- Check out Londons SEN sessions with theatres, and earlier opening times at Museums for children with an autism diagnosis or any additional need. We plan to compile a guide on these, but for now, consider these type of events at the London Transport Museum https://www.ltmuseum.co.uk/whats-on/family-events/early-explorer-morning-1. See “Dawnosaurs” at The Natural History Museum https://www.nhm.ac.uk/events/dawnosaurs.html and Early Bird at The Science Museum https://www.sciencemuseum.org.uk/see-and-do/early-birds
- Look at courses offered by your local Council. In Harringey, there’s so many groups and training available: https://www.haringey.gov.uk/children-and-families/childcare-and-early-years/parenting/parenting-support/send-local-offer
If you are the parent of an autistic child, what really helped you in the months leading up to or following their official diagnosis?